- The Connecticut Council on Developmental Disabilities is a Governor-appointed body of people with developmental disabilities, family members and professionals who work together to promote the full inclusion of all people with disabilities in community life.
- First established by Governor Thomas Meskill in 1971, the CT Council is authorized and funded by the federal Developmental Disabilities Assistance and Bill of Rights Act.
- The Council's focus is on people with the most severe and multiple disabilities that originate and manifest before the age of 22 and who are likely to require lifetime support, however, the Developmental Disabilities Act allows the Council to reach people regardless of their disability label.
- The Council's role is advocacy, capacity building and systems change. The Council is not a service provider.
MISSION STATEMENT
To promote the full inclusion of all people with disabilities in community life.
.
NUMBER of PEOPLE with DEVELOPMENTAL DISABILITIES in CONNECTICUT:
Estimated to be 38,000
NUMBER of COUNCIL MEMBERS
At least 60% of Council members are people with developmental disabilities and parents. The Council has 21 members: 8 people with developmental disabilities, 5 parents and representatives of the Bureau of Rehabilitation Services, Special Education, Title XIX/Adult and Elderly Services, the UniversityCenter for Excellence, Office of Protection and Advocacy, Title V/Maternal and Child Health, Department of Mental Retardation, and a local center for independent living.
NUMBER of STAFF : 3
STANDING COMMITTEES
The Council has 4 standing Committees:
- Executive Committee
- Grants Management
- Membership
- Policy and Planning
FREQUENCY of MEETINGS:
The Council meets on the 2nd Tuesday of January, March, June, September and November, and holds a Retreat on the 2nd weekend in May.
DESIGNATED STATE AGENCY/ADMINISTRATIVE AGENCY:
- The Council is a federal program that operates within state government as a state agency, however, the Council is not in state statutes and does not receive state funds.
- The Council is located for “administrative purposed only (APO)” with the CT Department of Mental Retardation (DMR) but DMR can exercise no control over the Council. DMR provides the Council with in-kind support, including business services and purchasing, the human resource system, office space, and information technology system.
2005 FEDERAL ALLOTMENT:
The Council is entirely federally funded. Funding is based on a federal formula. The Council's 2005 federal allotment is $685,216.
return to index
CURRENT COUNCIL PROJECTS
The Council is funding 24 initiatives, including nine (9) mini-grants and the following:
- Understanding Special Education(USE) and PPT parent training
- Connecting people to generic community associations
- “United We Ride” Transportation Coordination
- Inclusive Childcare and Recreation
- African Caribbean American parent support
- Family Support and Self-Determination Conference
- Kids As Self-Advocates and Career Training
- CT Public Television awareness messages
- Social Role Valorization (values-based) Training
- Disability Advocacy Collaborative
YWCA of New Britain -- To train Y teachers, and New Britain child care program staff, on the inclusion of children with developmental disabilities in child care programs.
Collaboration: Training is being arranged through the UniversityCenter for Excellence.
FAVARH, Canton-- To support asset mapping and capacity building to connect people to community organizations.
Building Inclusive Neighborhoods Conference -- To bring John McKnight and John Kretzmann, NorthwesternUniversity, back to Connecticut periodically to provide technical assistance to the Council and FAVARH on community building.
The CT Council introduced the concepts of building bridges to community associations, circles of support and personal futures planning in 1986 through a series of workshops with John McKnight, David Wetherow (Canada) and Beth Mount (Capacity Works). Over the years, the CT Council has periodically brought back into Connecticut leaders in community building and circles of support to rekindle the flame and to introduce the concepts to new people in the field.
Collaboration: The Council is exploring joint funding by the CT Department of Mental Retardation for a series of workshops by Beth Mount on person-centered practices.
UniversityCenter for Excellence, UCHC, Farmington -- The CT Council began to promote systems change for the inclusion of students with disabilities in regular classrooms in 1987 and, with the Office of Protection and Advocacy, helped establish the ConnecticutParentAdvocacyCenter, which is now funded through the CT Department of Education as a parent training institute. The CT Council introduced the concept of inclusive education to CT in 1989. The Council supported numerous advocacy, capacity building and systems change initiatives over the years, including support for the start-up of the CT Coalition for Inclusive Education (CCIE) in 1990. In 1991, 6 parents, the Arc of CT and CCIE sued the CT State Department of Education (SDE) in federal court for failure to enforce federal Individuals with Disabilities Education Act (IDEA) requirements that require children with disabilities to be educated with non-disabled children to the maximum extent appropriate. The case, known as P.J. et.al. v. State Board of Education et.al., reached a negotiated settlement in May 2002. In January 2002, the CT Council began supporting the UniversityCenter for Excellence (UCE) at the UCONNHealthCenter to provide training to parents in all of CT's school districts on how to use special education to improve its effectiveness for students with disabilities, with a particular emphasis on inclusive philosophy, policies and practices. Over a 3 year period, the UCE, in partnership with 10 parent agencies, delivered Understanding Special Education (USE), a 10 hour course, to 916 parents and educational professionals in 93 school districts. Parents reported feeling better equipped to advocate for their children and to actively participate in planning their children’s education program. Educators reported having increased knowledge of special education laws and an improved ability to work collaboratively with families. Also, the Council’s Chair, a parent and attorney, was trained by the Council of Parent Attorneys and Advocates (COPAA) in the Individuals with Disabilities Education Act (IDEA) and used that training to volunteer as a USE trainer and adviser to parents. During 2005, the UCE will train an additional 200 parents and education professionals in 8 more school districts. By 2006, it is expected that USE training will be continued with funding by the CT Department of Education.
Collaboration: The inclusive education movement has been an on-going collaboration with the Office of Protection and Advocacy and UniversityCenter for Excellence. Local training has been hosted by local parent groups.
Arc/CT, West Hartford-- To fund a half-time attorney to be co-located with the CT Coalition for Inclusive Education to train 8 to 16 advocates to assist about 288 parents in preparing for Pupil Placement Team meetings.
MARC, Inc., Manchester -- To provide 10 students from East Hartford, Manchester and South Windsor close to one-on-one individual opportunities for real world career experiences in conjunction with the Manchester Chamber of Commerce.
Collaboration: This initiative is expected to be a collaboration with the local chamber of commerce.
ADAPT of CT, Hartford -- To create, maintain and distribute a list of accessible apartments on the market throughout the state.
Collaboration: In 2000, with the Office of Protection and Advocacy, the Council supported the start-up, incorporation, achievement of not-for-profit status, and creation of a membership base for a Connecticut chapter of ADAPT to organize people with developmental disabilities.
Rammler and Wood, Ellington -- To document successful instances of full inclusion of students with developmental disabilities in extracurricular recreational, leisure and social activities in CT public schools and use the documentation to advocate in Pupil Placement team meetings for replication.
Americans with Disabilities Act Coalition of CT -- To pilot in Sherwood Island (Westport), Fort Trumbull (New London), and Chatfield Hollow (Killingworth) state parks outdoor recreation compliance with the Americans with Disabilities Act.
Collaboration: The Coalition’s office is located with the Office of Protection and Advocacy.
United We Ride Transportation Coordination -- To achieve accessible, affordable and available transportation that addresses the interests of people with developmental disabilities and other transportation dependent people by using the federal United We Ride initiative to influence Connecticut’s State Action Plan for Coordinating Human Services.
Collaboration: This is an initiative through the UniversityCenter for Excellence and in conjunction with the CT Department of Transportation.
-
Self-Advocacy, Self-Determination and Parent Support
Kids As Self-Advocates -- To support for a fourth year the start-up, maintenance and launching of a non-for-profit advocacy organization of kids with developmental disabilities co-funded by the CT Youth Leadership Project. KASA grew to 36 members with 25 of these members participating regularly at monthly meetings.
In 2002, the CT Council funded CT Family Voices to start-up the first state chapter of Kids As Self-Advocates (KASA). KASA is a national, grassroots network of youth with disabilities. The CT Council started KASA to address the need for new and young leaders. In 2003, the CT Council brought KASA in-house as a Council funded and staff supported initiative and the State Department of Education transferred $10,000 for KASA to the CT Council. In 2004, KASA became a project of the CT Youth Leadership Project (CYLP). The CYLP awarded $18,410 to the CT Council to support KASA. The CT Council provided additional funds and technical assistance. Two (2) KASA members were paid stipends to serve as organizers of KASA events and meetings. KASA grew to 36 members with 25 of these members participating regularly at monthly meetings. KASA made many presentations to school personnel on transition from public school and presented on self-advocacy at the national convention of the Arc United States in Boston, Massachusetts. By 2006, it is expected that KASA will be part of a not-for-profit agency or its own not-for-profit agency.
Collaboration: This initiative has been supported directly and indirectly by the CT Department of Education and directly by the CT Youth Leadership Project.
African Caribbean American Parents, Hartford -- To develop an African and Caribbean parent movement in New Haven.
CT Public Television (CPTV), Hartford -- To begin an education awareness campaign promoting full inclusion of all people with disabilities in community life with the airing of 30 second television messages on in-home birth to three support and inclusive education to be shown 156 times during children’s programming and prime time between March and June 2005.
Collaboration: CT’s Birth To Three recruited a family and service provider for the filming of in-home support. While the CT Council will be credited for co-producing the video with CPTV, the Birth To Three program will receive a great deal of public exposure. The UCE recruited students, their families and public schools. The UCE, the public schools and the CT Coalition for Inclusive Education will receive a great deal of public exposure.
The CT Council began working with CPTV in 1975 on the periodic development, production and broadcast of videos on issues concerning people with developmental disabilities. “Count Me In,” the CT Council’s first 30 minute video promoting inclusion in the community, won national awards and was acquired by national and international agencies. Rights to “Count Me In” were purchased by a cable TV network which provided the CT Council with royalty income into the 1980s. In 1992, some of the people included in the everyday lives of their communities were introduced to a larger public in “One Of Us,” a compilation of four video portraits which was produced in conjunction with CPTV and aired during prime-time. Additional documentaries were aired during the 1994/95 television season, including “A Passion For Justice,”with Bob Perske on people with intellectual disabilities and their encounters with the criminal justice system.
Disability Advocacy Collaborative, Cromwell -- To revitalize the disability rights movement by pulling together diverse self-advocacy and parent organizations into a collaborative leading to a convention in 2006 and follow-up.
Collaborative; By definition, this initiative is a collaborative of many self-advocacy and parent organizations.
$1,000 Empowerment Grants -- To provide small, short-term grants for up to $1,000 to individuals and families to enable them to attend events of their choosing that support the Council’s mission and philosophy.
Social Role Valorization Implementation Project -- To provide training on people with developmental disabilities at risk in hospitals (Hospital I, March 23), training of advocates for people with disabilities at risk in hospitals (Hospital II, March 30), training of child welfare and support system personnel (April 25-26 and May 2-3) and training on the use of restraints in human services (Restraints, May 25) all co-funded by $15 registration fees.
Collaboration:Training of child welfare and support system personnel will be done in collaboration with the Office of the Child Advocate and the CT Department of Children and Families.
The CT Council’s support for social role valorization (SRV) training began in 1986 with support for the CT Training Project for Values-Based Services. The CT Council has periodically supported SRV training since 1986.
Family Support and Self-Determination Conference -- To become the primary support for the 2nd Family Support and Self-Determination conference in collaboration with several public and private agencies. The Council will bring radio personality, self-advocate and motivational speaker Greg Smith (The Strength Coach) to present at the conference, following his PBS documentary to be broadcast on CPTV in February 2005.
Collaboration: This conference is co-funded or co-sponsored by a number of state agencies, including the Departments of Mental Retardation and Children and Families, the CT Family Support Council, not-for-profit parent groups, and self-advocacy groups.
UniversityCenter for Excellence, UCHC, Farmington -- To support Council publications for the education of policymakers through a memorandum of agreement with the UniversityCenter for Excellence at the UCONNHealthCenter.
Collaboration: This is a collaboration with the UCE and GibbsCollege, a private business school.
CT Family Support Network, South Glastonbury -- To develop, in Spanish and English, print and distribute a “How To Make Your Family Supports Work For You” brochure.
DisputeSettlementCenter, Norwalk -- To assess the market for providing alternative dispute resolution specifically tailored to persons with developmental disabilities and their families in Fairfield county.
Parents Available To Help, Northford -- To purchase a laptop computer and portable multimedia projector for the purpose of piloting parent-to-parent, with an emphasis on minority parents, in the north central region of the state.
UniversityCenter for Excellence, UCHC, Farmington -- To promote that “disability is a part of the human experience” to elementary school children, particularly involving the use of a service dog.
Special Education Network of New Canaan -- To create on the web site and in libraries a library of video and digital recordings of speaker presentations to parent organizations in FairfieldCounty.
WeCAHR, Danbury -- To train 8 to 10 veteran parents in greater Danbury to provide parent-to-parent support to about 30 parents of newly diagnosed children with disabilities.
return to index
EXAMPLES OF SIGNIFICANT LONG TERM ACHIEVEMENTS
Family OLMSTEAD AND THE AMERICANS WITH DISABILITIES ACT
In response to the U.S. Supreme Court'sOlmsteaddecision, in January 2000 the CT Council called and organized the CT Olmstead Coalition to influence CT’s Olmstead Plan. The CT Council ran the CT Olmstead Coalition until the Fall of 2000. From 2001 through 2004, the Council funded the CT Association of Centers for Independent (CACIL) to support the activities of the CT Olmstead Coalition. Governor John Rowland asked the Department of Social Services to develop an Olmstead Plan and instructed the General Assembly’s Long-Term Care Planning Committee to provide oversight and leadership. A Community Options Task Force was created to take the lead in the development of the Plan. Members of the CT Olmstead Coalition participated on the Task Force. After 2 years, the Task Force created a CT Olmstead Plan, also known as Connecticut’s Community Options Plan, entitled “Choices Are For Everyone.”
PERSONAL ASSISTANTS
The CT Association of Personal Assistants (CTAPA) was founded in 2001 by personal assistants for personal assistants with support from the CT Council. The Association’s main focus has been to establish personal assistance as a viable career and to grow the number of people who become personal assistants. The ranks of personal assistants participating in the Association has grown to 84. The movement has become incorporated in Connecticut’s Real Choice grant known as the Community Integrated Personal Assistance Supports and Services (C-PASS) grant. Through leadership by the UniversityCenter for Excellence, the C-PASS grant will continue the efforts begun by the Council.
CT LIFESPAN RESPITE COALITION
Following a small feasibility study grant in 2001, the CT Council supported the start-up and continuation of the CT Lifespan Respite Coalition (CLRC) through 2004. The Coalition's main focus has been to achieve passage of a respite bill through the CT General Assembly. Passage of legislation has failed in the last 2 sessions of the CT General Assembly but impetus for the legislation grows as Coalition membership grows. The Coalition has also put itself in position to capture federal funds under the proposed federal Lifespan Respite Care Act.
EXPANDING STATE SERVICES AND SUPPORTS
Connecticut is 1 of only 6 states that has a state agency serving only persons with mental retardation labels. No less than 7 separate state entities serve people with other disability labels and each have established eligibility criteria based on diagnostic labels, income limitations, and discrete functional needs. This has led to uneven access to state sponsored services that often denies critical support to citizens with substantial need for assistance, resulting in significant frustration and hardship for individuals and families, and fosters the use of inappropriate, and more expensive, systems of care such as acute care hospitals or long-term care facilities. In July 2002, a CT General Assembly Advisory Commission on People with Developmental Disabilities (DD) who do not have Mental Retardation, submitted 11 recommendations, including: (1) adopting the federal definition of DD as the basis for service eligibility;(2) designating the Department of Mental Retardation (DMR) as the responsible lead agency for coordinating existing services and developing new services; and (3) establishing an independent Council to advise the lead agency in system design, implementation and quality enhancement. The Council supported the participation of 4 parents and a self-advocate on the Advisory Commission and, with DMR, staffed the Commission. On October 1, 2002, the Commissioners of DMR and the Department of Social Services (DSS) submitted an implementation plan to the General Assembly that called for piloting a model demonstration project of expanded service eligibility and delivery with guidance from an Interagency Developmental Disabilities Workgroup (IDDW) of 11 state agencies, including the Council. The Council coordinated a meeting of 17 state and federally required state-administered boards, commissions and Councils addressing people with disabilities to work with the IDDW. Outside of state government, the Council supported the CT Autism Spectrum Resource Center (ASRC) to educate and organize agencies and individuals across all disability groups to promote legislative enactment of the Commission's recommendations. ASRC enabled participation by self-advocates and family members at legislative hearings in 2003. The CT General Assembly found neither the political will nor funding to expand services and supports. In 2004, the CT Council joined with the Office of the Child Advocate and parents who have children with disability labels along the Autism spectrum to resurrect the recommendations of the Advisory Commission. Five (5) bills are pending before the 2005 session of the CT General Assembly to expand services and supports to all people with developmental disabilities.
UNIVERSITYCENTER FOR EXELLENCE
In 1978, the CT Council began discussions with Connecticut colleges and universities for the hosting of a University Affiliated Program (UAF). By 1984, the CT Council recruited the University of Connecticut School of Medicine to be the lead agency for a satellite UAF. Technical assistance was requested from the RoseF.KennedyCenter – UAF, Bronx, New York, and input was gathered from private non-for-profit agencies, public agencies, universities and persons with disabilities. A $7,000 feasibility study grant was awarded to Connecticut by the federal Administration on Developmental Disabilities to continue the study. Today, the UCONNHealthCenter hosts a full-fledged, multi-million dollar University Center for Excellence in Developmental Disabilities Education, Research and Service.
return to index
COLLABORATIVE RELATIONSHIPS
The CT Council has had an outstanding collaborative relationship with the Office of Protection and Advocacy (P&A) since its inception in 1978 and the UniversityCenter for Excellence (UCE) since its inception in 1986. The CT Council participated in the design and implementation of state legislation that created P&A and led the state in recruiting a university to host the UCE. The DD Network has routinely collaborated on many issues over the years. In addition to grant funded collaborations, the following are recent non-grant collaborations:
The DD Network has sponsored two (2) forums for legislators and the forums are planned to be held annually. A Forum March 24, 2004 was on childhood inclusion, housing and transportation. The February 7, 2005 Forum was on Medicaid waivers and featured a Medicaid workshop by Allan Bergman, President and CEO of the Anixter Center, Chicago, IL.
The DD Network has also been present in the State Capitol during the opening of the General Assembly session. Each Network partner sets up a table of information in the concourse between the Legislative Office Building and the State Captol and distributes information about each partner and the DD Network. This will be an annual Network event.
The DD Network held a conference on accessible voting in the LegislativeOfficeBuilding of the State Capitol on July 26, 2004, the 14th Anniversary of the ADA. The conference included discussion of the barriers to voting by both legislators and people with developmental disabilities. In the concourse between the LegislativeOfficeBuilding and the State Capitol, ten (10) vendors demonstrated new voting technologies designed to remove barriers to voting for persons with disabilities. Following on the heels of controversy during June 2004 regarding electronic voting, the CT League of Women Voters withdrew their initial intent to co-sponsor the conference, the Deputy Director and Assistant Attorney General of CT's Election Enforcement Commission raised "special concerns" regarding proprietary coded direct recording electronic (DRE) voting and a CT citizens group in favor of voter-verifiable paper ballots distributed leaflets in opposition to computer voting. Nevertheless, the State of Connecticut is exploring electronic voting. A request for proposal for electronic voting machines is being drafted.
Additional such Network conferences are being planned.
For more information, please click on this link for the Council’s 2004 Annual Report: http://www.ct.gov/ctcdd/cwp/view.asp?a=1995&Q=291432&ctcddPNavCtr=|#42795
return to index |
